Cystic Fibrosis Trust

Stay informed with our #cysticfibrosis media roundup, featuring four key news updates: permanent modulator access agreements, our work to address Creon shortages, the Your Life and CF survey, and the King's Birthday Honours announcement. Visit our website to learn more. ➡️ https://ow.ly/BVke50SCp2m #cfnews #creon #vertex #OBE #KingCharles

Have you entered our summer raffle yet? 🌞 Enter by 12 August for just £1 per ticket and be in with a chance of winning a whopping £2,000! 🎟️ Every ticket you buy or sell will help us continue to fund essential research to provide life-changing treatments and support for people with #cysticfibrosis and their families, like Nell. "Cystic Fibrosis Trust has been amazing and the research and developments that have come about as a result of the charity’s efforts has been incredible to see. Kaftrio has made a huge difference for me and my brother, but I know it’s not a cure and some people can’t benefit from it. Obviously running isn’t everyone’s favourite thing, so entering the Summer Raffle is a great way to support Cystic Fibrosis Trust and a lot kinder on your feet!” ⛱️ https://ow.ly/Wy2h50ShXeU

15-year-old Tilly shares what she'd like her parents to understand about her CF. In March 2024 we held a very special event for parents of children with #cysticfibrosis Young people from our Youth Advisory Group kindly gave their time to answer questions sent in by parents. Visit our YouTube to watch the full recording. ➡️ https://ow.ly/ALgh50SBikJ

This Fundraiser Friday we wanted to celebrate with Simon & Cheryl Macdonald for arranging their 3rd successful golf day and evening event at Paulton's Golf Centre in support of Cystic Fibrosis Trust. This year they raised over £3,500 which put them into double figures for their overall fundraising total. As always they had wonderful raffle prizes and this year even Elvis & Madonna made an appearance! Well done & thank you both as well as all your friends, colleagues and family that come along each year. Simon says - "My incredible wife Cheryl might face challenges every day because of cystic fibrosis but her strength & spirit are boundless. This is why we put this amazing event on every year. It's a chance to raise awareness of the condition, support research for a cure and celebrate the incredible fight so many go through. But most importantly it's a way to show Cheryl how much love and support surrounds her."

Tilly, who is 15 years old and has CF, interviews her parents about her diagnosis story, and what it's been like to bring up a child with #cysticfibrosis Watch the full video on our YouTube channel. ➡️ https://ow.ly/2o7p50SzwW7 Find out more about our new diagnosis resources on our website. ➡️ https://ow.ly/Fl7k50SzwW8

A huge thank you to Paul O'Hagan and his fellow colleagues from EvoQuip, who raised funds for Cystic Fibrosis Trust at the recent Hillhead-International quarrying, construction and recycling show. Paul’s brother, Cahir, died in October 2023 and the team at EvoQuip were inspired to fundraise and create awareness in his memory. It certainly created a competitive atmosphere and we are thrilled to report the team have raised £1,952 so far.

🌟 Join our free webinar on digital marketing 🌟 Whether you are running your own business, applying for this year’s Helen Barrett Bright Ideas Award, or building an influencer channel; join our digital marketing webinar and find out how to grow your business in an affordable way 📈 We have teamed up with digital agency Future Mantis to run this exclusive webinar on effective digital marketing techniques, as part of our Work Forwards programme for people affected by #cysticfibrosis It will take place on Friday 2 August, from 12.30-1.30pm on Microsoft Teams. Click the link to register! ➡️ https://ow.ly/IYSV50SyHco

If you're a parent or carer of a child with cystic fibrosis ages 4-6 then you're invited to join our online Baking workshop led by Cicely! You and your child will bake delicious Vanilla Sponge Cupcakes with funky colours and patterns! See the full recipe below 🧁 When: Tuesday 23 July from 4.30-6pm To sign up, please email ellie.mindel@cysticfibrosis.org.uk 🧁 Ingredients 🧁 120g butter, softened 120g caster sugar 2 egg 1 tsp vanilla extract 120g self-raising flour (Optional) Sprinkles/hundreds and thousands #cysticfibrosis #strongbeginnings #onlinebaking #bakealong #onlineworkshop #zoom #cfyouth #cfaware

More than 1,000 children and adults have now joined the CF BioResource project! The project is aiming to create a register of people with CF based on their genetic information, which will significantly improve our understanding of CF in many ways. Read our latest blog to find out five ways the CF BioResource project could help people with #cysticfibrosis ➡️ https://ow.ly/KfIc50Sy8sM #ResearchWednesday #CFNews

From not being able to swim in April to conquering 750m in Loch Lomond, Claire tells us about taking on the daunting Go Swim challenge as a non-swimmer! 🌊 With her partner’s son affected by CF, Claire knew she wanted to do something to support the Trust. Check out her story on our website now! ➡️ https://ow.ly/oUlq50SxcKj Looking for your own swimming adventure this summer? Join our new challenge 'Swim, Dip and Dive'! 🏊♀️ Swim 21 miles in July and August, either by setting yourself a daily target or taking on a one day challenge! Whether you frequent the pool or, like Claire, are just getting started, dive in to help every person with #cysticfibrosis in the UK live without limits. Your support makes all the difference. ➡️ https://ow.ly/wBkN50SxcKg